UIC - UIC Division of Specialized Care for Children

A mom holds her young daughter with complex medical needs and smiles at her

DSCC provides support and resources to strengthen caregivers’ ability to care for themselves and children with special healthcare needs.

November is National Family Caregivers Month. It’s an opportunity to celebrate all of you who selflessly and continuously care for your children and loved ones with special healthcare needs.

At the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), we recognize the huge role you play in your child’s overall health and wellbeing. We value our partnership with parents and caregivers to help set goals for your child, identify strengths and make plans to achieve what is important to your family.

We also understand the importance of caregiver health and providing you the right support and resources. DSCC is dedicated to empowering caregivers and strengthening your ability to provide care for someone else.

We recognize how you are there every day, managing multiple care needs and navigating complex healthcare systems, insurance systems and more. Our priority is to help strengthen your knowledge, reduce your stress and help you feel more confident and organized in your child’s care.

Here are three significant ways we aim to empower caregivers:

Partner with you to identify what you, your child and your family need. As the parent or caregiver, you know your family’s unique needs and values better than anyone. We listen to these needs and partner with you to identify your child and family’s goals and how to accomplish them. If you are not enrolled in our program or need help knowing how to identify your needs, this quick self-assessment tool can help.
Help you brainstorm and connect with others. Conversations around health allow all of us to get creative, see things differently and develop new ways of doing things. These creative ways can save you time, energy or allow for improved interactions. Some connections in the community are your primary health or behavioral treatment specialist, other DSCC parents or a community parent support group.
Connect you to the latest research and information. As growing research helps us better understand physical and mental health, it can also show new techniques, interventions and treatment options. Think about how you learn best and reach out to trusted sources. Our staff can help you find the best sources of information. We are also experts on local resources and supports available in your community.

The physical and emotional demands of caring for a child with special healthcare needs are 24/7. Though we can’t take away all the worries and emotions, we can provide a consistent helping hand to support you through your child’s journey with a medical condition

To learn more about our care coordination, visit our How We Help page. You can also contact your local DSCC Regional Office or call us at (800) 322-3722.

Our online Resource Directory also includes resources and tips for caregivers.

Featured resources include:

Emma Wiker and her sister, Ellen, stand on either side of a community pet pantry they opened in Athens, Ill.

Emma Wiker’s community effort helps local pets stay fed and cared for during the COVID-19 pandemic.

For six years, Emma Wiker has run the Animal Abusive Protection Program to raise money for abused or abandoned animals in Menard County.

The 15-year-old sells buttons and key chains and organizes a hugely popular annual dog walk in her hometown of Athens to benefit the program.

Emma Wiker and her sister, Ellen, stand beside the pet pantry they opened in Athens, Ill. — *Emma Wiker and her younger sister, Ellen, stand beside the pet pantry they opened in Athens, Ill.*

For the 2020 dog walk, Emma decided to use the proceeds to open the Animal Abusive Protection Program Pet Pantry over the summer. The pantry ensures that no local animal will go hungry due to the COVID-19 pandemic.

Emma has been a participant of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for the last four years. Her mother, Violet, is DSCC’s Family Liaison.

The Wiker family says Emma grew up with a determined spirit and desire to help others. Emma was inspired to start the dog walk in 2014 after seeing a disturbing image of an abused dog that went viral on social media.

Emma handles all the responsibilities of planning and coordinating the dog walk herself and has become a local celebrity. For this year’s walk on July 26, Emma asked her younger sister, Ellen, age 12, to partner with her.

The sisters raised a grand total of $1,978 from this year’s event.

Emma and Ellen worked with community member Jim Roles, who designed, built and donated the pantry.

*The pet pantry is filled with food, treats and toys for pets.*

The pet pantry is stocked with food, treats and toys. It is set up for pet owners to take what they need and for others to leave donations as they are able.

The funds raised during the dog walk have helped fill the pantry when community donations run low. Demand at the pantry has been high, with Emma and Ellen stocking the shelves multiple times.

The pet pantry is located in Athens Community Park.

Kudos to Emma and Ellen for helping to fill a genuine need in their community!

Illustration of people figures hold hands and form a chain around the globe

To celebrate World Mental Health Day, DSCC promotes the importance of social connection and ways to support it.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is committed to strengthening families and building healthy communities.

We encourage our participant families, providers, community partners and all Illinois residents to join us in recognizing World Mental Health Day on Oct. 10.

To celebrate, DSCC Quality Improvement Specialist Diane Becker shares the latest research on how social connection affects both our physical and mental health:

We know that for all of us to grow, develop and thrive in Illinois, it requires us to work together as a community to remain safe and support each other.
This support includes creating opportunities for positive social connections and providing information and access to mental health support.
Positive social connections allow us to feel valued. They also provide opportunities to work together to solve problems.
Growing research shows more physical and mental health benefits to creating and maintaining these relationships. Positive connections create chemical changes that affect the immune system, nervous system, glucose levels and blood pressure.
The American Psychological Association’s article, Life-saving Relationships, provides more evidence of emotional connections and health.
The World Health Organization (WHO) is leading the conversation about mental health in positive terms and showing its connection to overall health and wellbeing. Social and environmental factors known to affect physical and mental health include:

* Food and housing security
* Safety in the home, school, work and community
* Access to care
* Connection to others

Mental health services are available throughout Illinois to offer connection and supports, even during this time of social distancing.
DSCC staff can also help you find available services and resources in your area to meet your unique needs.
Services are a safe and consistent place to move forward in adjustment or recovery to any setback, trauma, grief or loss that you may be experiencing.
Supports can also benefit anyone seeking a healthier way to work through difficult or complex emotions, to challenge negative thinking patterns or to learn new techniques.
The National Institute of Mental Health offers good information on a variety of mental health resources and assistance that are availbale if you think you may need more support.

Access to care remains DSCC’s priority.

Our team members are available to connect you with other families for peer-to-peer support. We can also share additional health supports and services in the community.

To learn more, please reach out to your local DSCC Regional Office or call us at (800) 322-3722.

You can also visit our online Resource Directory for additional support.

Featured resources include:

Project Mobility awards adaptive bikes to seven youth with mobility issues

Six-year-old-Dayna loves to keep up with her older brothers.

But keeping up became a lot harder when biking became a favorite pastime during the COVID-19 stay-at-home order.

Dayna was born with spina bifida, a birth defect in which the spinal cord fails to develop or close properly. She has no feeling in her legs from the knee down, so a traditional bicycle is too difficult to maneuver.

To give Dayna greater independence, her family entered a contest to raise money for a new adaptive bike.

Thanks to the Bike Rack’s Project Mobility program, Dayna and six other children are receiving specially configured bicycles at no cost.

Project Mobility is a nonprofit organization based in St. Charles, Ill. It offers recreational events using specialized bicycles for people with disabilities. The organization also does adaptive bike giveaways.

Adaptive bikes can cost anywhere from $1,000 to $5,000.

“We’ve known about Project Mobility for a few years. We go to the Ability Expo every year and they are well-known in the spina bifida community,” Dayna’s mother, Kimberly Dorencz-Cuervo said. “When we saw they were starting up an adaptive bike giveaway for this year, we decided to enroll Dayna.”

Dayna is a participant in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

She was one of seven children with mobility issues who entered the Adaptive Bike Giveaway – Everybody Rides 2020 edition.

“One way that we get to go out as a family and do things is by bike riding, and it really brings normalcy to our days,” Kimberly told Chicago WGN 9 News. The news station featured the contest and Dayna in a recent news story.

“Dayna can’t participate in it, so having this bike would just be able to make her feel included, and inclusivity is so important to us. It would be a blessing,” Kimberly added.

Typically, the contest awards a bike to the youth who receives the most shares and likes on Facebook.

But this year’s contest went viral. Thanks to the generosity of donors and sponsors, all seven children will receive their own adaptive bike. Chicago WGN 9 covered the great news in a follow-up story.

“We thought that was awesome,” Kimberly said. “Dayna is so excited. She can’t wait.”

Kimberly said the bike shop is currently customizing Dayna’s bike, so she expects it will be ready to go for next spring.

“Having the adaptive bike will allow her to participate with the family in bike riding and doing all of the things that a typical child does,” she said. “It will also help her in making friends because many of the kids in our neighborhood ride bikes. I think it’s going to help her with the social aspect, too.”

Congratulations to Dayna and all the giveaway winners!

For more information on Project Mobility, visit www.projectmobility.org/.

Note: This post was updated on Sept. 24, 2020

All staff have returned to work at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

The University has reached an agreement with SEIU Local 73, ending the strike on Sept. 23.

We are pleased to welcome all staff back to the office and look forward to working together to help your children and families reach their full potential.

Thank you for your understanding during this time.

As always, if you have an urgent need or concerns, please contact your Care Coordinator directly or reach out to your local DSCC regional office.

You may also call our main telephone number at (800) 322-3722 or email dscc@uic.edu.

A brother and sister look at a laptop screen together while doing homework

Resources to help support children and youth of all abilities.

This year’s return to school is a partial or completely virtual experience for many Illinois students amid the COVID-19 pandemic.

Parents and caregivers must navigate how to best support their children and make the school year as engaging and beneficial as possible for their unique needs.

To help families adapt to these unusual circumstances, the Division of Specialized Care for Children team has compiled a list of tips and tools for remote learning in the following categories:

We’ve put these items together in our latest resource roundup newsletter.

You can also find each of these resources and many more learning activities in the “Childcare, Learning and Education Tools” section of our COVID-19 Resource Directory

To subscribe to our newsletter, please complete this brief form.

DSCC provides dedicated email address for families to submit concerns about personal protective equipment

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) team is working hard to make sure our participants’ needs are met during the COVID-19 pandemic.

For families in the Home Care Program, access to personal protective equipment (PPE) is extremely important for their children with medical complexity.

Nursing agencies are responsible for providing PPE supplies for nurses working in the home.

If you have concerns about the PPE supplies provided for your home nurses, please let us know.

We’ve created a new email address for Home Care families to submit these concerns at DSCCPPEConcerns@uic.edu. Our staff will follow up on any reported issues.

Please continue communicating with your DSCC Care Coordinator to discuss any additional issues you experience. We are here to support your family and will work with you to find solutions and the right resources.

We also encourage you to check our COVID-19 Resource Directory often for the latest health information, education guidance and learning tools, financial assistance and parenting/caregiving support.

A boy with medical complexity sits in his wheelchair and smiles as his mother caresses his head

Tips to help parents of children with medical complexity prepare for their own illness and other emergencies

Parents and caregivers of children with medical complexity often focus solely on their child’s health and wellbeing. But what happens when the parent/caregiver gets sick?

It’s a crucial question that families must consider.

“Self-care is overlooked by many parents because they’re so focused on day-to-day care for their child and thinking about what happens if the child becomes ill. Sometimes the daily care of their child can really overshadow parents caring for themselves and making contingency plans if they become ill,” said Dr. Alexandra Ryan, Medical Director for Ann and Robert H. Lurie Children’s Hospital of Chicago’s Health Partners Care Coordination.

“Especially in a climate like this where we have a pandemic, it’s even more important for families to think about what happens if a parent or caregiver is unable to do that daily care.”

Advance preparations can help parents/caregivers reduce stress, lighten their mental load and protect the child’s health and safety during a family illness and other emergencies.

“It’s simply disaster planning and something that all families of children with medical complexity should do on an ongoing basis,” said Dr. Carolyn Foster, Assistant Professor of Pediatrics at Lurie. “For many of these children, they can’t have just any babysitter or relative come over and learn it all in five minutes… The needs are so specific for these children, it requires additional planning.”

Drs. Foster and Ryan spoke with UIC’s Division of Specialized Care for Children (DSCC) about how to start these conversations with your pediatrician during the pandemic and beyond.

Assess your risk

It’s important to learn how to mitigate your family’s risk of contracting COVID-19. Dr. Foster says you can talk with your pediatrician about how to balance this risk with your child’s needs.

“For some children, going to school will be really important because of the way their therapies are set up or what their school’s plans are for in-person learning,” she said.

Lurie has put together a helpful guide, “Return to School for Youth with Special Healthcare Needs: Key Questions and Considerations for Families.”

It includes questions to discuss with your child’s doctor.

Pediatricians can recommend prevention strategies and what works for other families in similar situations.

The next step is preparing for what happens if you do get sick and stay ill for an extended period.

During these conversations, pediatricians may ask about your family’s living situation, including your home’s physical setup and who could isolate with you.

“This information can help with the decision-making and planning, although it’s not something everybody may be comfortable or ready to talk about with their pediatrician,” Dr. Foster said. “In this case, it’s very relevant.”

Have an up-to-date care plan

One of the most important steps for parents of children with medical complexity in general is to make sure your child has an up-to-date care plan.

The care plan should include a description of your child’s major medical issues, a complete medication list, an overview of their daily routine, a list of their healthcare providers and a plan for what happens if your child becomes ill. (The National Resource Center for Patient/Family-Centered Medical Home provides numerous tools, templates and more to help build a care plan.)

You should also keep an inventory of your child’s necessary medical supplies and have a backup supply, when possible, in case you need to quarantine. (DSCC also provides guidance for how to safely clean and reuse home medical supplies.)

“Having that information available makes it easier for whoever needs to take over care for the child in an emergency,” Dr. Foster said. “So, starting to develop the care plan if they don’t have one already is very important.”

Choosing backup caregivers

The care plan should also identify appropriate backup options if you or the primary caregiver cannot care for your child. These options could include family members, friends, a respite or transitional-care facility, or the hospital.

It’s important to consider who is best suited to provide backup care and make sure these individuals are aware and willing to help.

“Something for parents to keep in mind as they are thinking about backup care is trust. It’s more important that parents trust this person with the medical care and that the child can also develop trust in this person, whether it’s your closest family member or not,” Dr. Ryan said. “It’s more important to think about the characteristics of the person and how much trust you have in that person’s ability to do the tasks for the child, rather than the relationship.”

Dr. Foster recommends letting the backup caregiver spend time with your child and practice administering medication, watch how to safely transfer them and so on.

“It reduces the stress for the person who has to step in so it’s not all new to them,” she said.

If a family member or friend is not available, Drs. Foster and Ryan suggest looking to your family’s faith or school community. You should also let your pediatrician know if you’re struggling to identify backup care.

Preparing for hospitalization

Depending on their medical complexity, some children may require hospitalization if their parent/caregiver becomes ill. Discuss this possibility with your pediatrician and identify your hospital preference and transportation needs.

Dr. Foster said pediatricians can help you find the least restrictive option available for your child, such as a long-term care or respite facility.

If hospitalization or a facility stay is necessary, write down any “need to knows” about your child and keep them with their care plan and medication list.

Dr. Ryan said it’s helpful to include information about your child’s baseline development and behavior, such as how they typically communicate, how your child looks when healthy, etc.

“So often if somebody is hospitalized, especially patients with mental disabilities or medical complexity, the patient team may not know what the child looks like when they’re healthy. If you don’t know the child, it can be really hard to tell if they’re sick,” Dr. Ryan said. “Making sure that’s something that’s communicated to everyone taking care of the child is really important.”

Dr. Foster said it’s also good to have a list of important phone numbers at the ready. These contacts should include any specific transportation needed to get your child to the hospital.

“If there are any specific transportation arrangements that the caregiver should know about, that should be part of the care plan,” she said.

Home nursing

Some children with medically complexity who have nursing in the home setting may be able to continue to stay at home but with extra nursing care, if the child’s primary caregiver is ill or incapacitated.

Illinois’ Medicaid Program has worked to ensure additional respite hours are available for children who receive services from a Medicaid waiver.

Let your nursing agency know in advance if you prefer this option for your child.

Plan for future guardianship needs

Parents/caregivers should always make sure they have a will in place. A will ensures your future guardianship needs and other important decisions are planned for accordingly.

“We all know, especially in today’s world, how quickly things can change, so it’s really important to put planning a will more on the front burner for any family, but especially if you have a child with medical complexity who is going to require specialized care,” Dr. Ryan said.

“If a family has gone through the mental exercise of figuring out who they trust and who they’d like to take care of their child in case they get sick, then who they’d like to care for their child in the long-term if something happens to them may be the same person,” she added. “It may not be someone who guardianship automatically goes to, so that’s why it’s so important to have something in writing going forward.”

Lurie and DSCC staff recommend the following resources:

Greenlight Family Services – Formally known as the Center for Law and Social Work, Greenlight helps families all over Illinois with adult guardianship cases and can also counsel families on backup arrangements as well.
Lurie’s Understanding Guardianship Tip Sheet – Available in English and Spanish
Illinois Guardianship and Advocacy Commission
The Guide to Special Needs Planning – Information on special needs trusts from the Academy of Special Needs Planners
The Family Caregiver Alliance – Provides fact sheets on legal topics, including conservatorship and guardianship
Family Voices resource e-blast – Includes tips for what to do if the caregiver gets sick/can’t care for their child
Illinois Attorney General’s Office – Provides legal assistance referral information
The National Hospice and Palliative Care Organization – Information on advance directives in Illinois
The Conversation Project – Provides conversation starter kits to help families plan for their wishes regarding end-of-life care

Prioritize planning

Though these steps and conversations may require some additional effort, Drs. Foster and Ryan say they are well worth the time and peace of mind.

“I think there’s a lot of invisible stress that parents may not even realize they have on their mind,” Dr. Ryan said. “You can really tackle it by having a plan in case the worst happens. People will see a lightening of that mental load once they have a plan in place.”

Dr. Foster also notes that there is no one-size-fits-all approach to contingency planning.

“Like any family decision, yours might be slightly different than others,” she said. “It’s very individualized. I’ve heard parents worry about judgment or this is what others are doing, but it’s a personalized decision based on a family’s unique situation.”

A medically complex little boy smiles up at his father while sitting in his arms

DSCC is partnering with HFS to focus on families’ concerns and find solutions to pandemic-related challenges.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) takes pride in our partnership with the participants and families we serve.

Some Home Care parent partners have let us know about recent concerns affecting their children and families. We are working with the Department of Healthcare and Family Services (HFS) to address these concerns.

DSCC’s leadership would like to share the following updates with our Home Care families:

School in the fall

This school year will likely be a very different experience for our participants. With the first day fast approaching, we want you to know that DSCC and HFS are partnering to discuss ways to ensure your family is supported.

The decisions for how schools will operate this fall is up to individual school districts across the state.

We know many schools have yet to comprehensively address how they will handle services for children with individualized education programs (IEPs). Please communicate closely with your school district.

Also, let your DSCC Care Coordinator know if there are ways we can help support you and your child. Our staff can attend school meetings and work with your child’s IEP team to make sure their needs are met.

In a recent notice from HFS, the agency states it will ensure your child receives adequate nursing hours if the way nursing hours are provided in the school setting changes. Some individuals already have this difference written into their 2352. DSCC is working to get this information to HFS for changes to be made.

If your child’s difference in nursing hours from school is not clearly stated in your 2352 allocation, please notify your Care Coordinator so we can work to have HFS review your needs further.

DSCC encourages you to discuss any concerns about your child’s school-related needs with your pediatrician. Your child’s medical team can help weigh the pros and cons of in-person versus remote learning, if applicable.

Personal Protective Equipment (PPE)

Nursing agencies are responsible for providing PPE supplies for nurses working in your home, as always.

With the COVID-19 pandemic creating an increased demand for PPE, HFS has approved an additional $16 per day payment to nursing agencies on the days a nurse is working in the home. The nursing agencies across the state have received guidance on how to bill for this additional payment (a fairly simple process).

DSCC has been communicating regularly with home nursing agencies about the availability of PPE supplies. To date, availability has not been a problem. If you have concerns about the PPE supplies provided for your home nurses, please let DSCC know.

Your Home Medical Equipment company handles providing PPE supplies for your family. You will need an order from your child’s provider for these supplies.

Reminders

HFS received approval for several additional elements to be provided for your child, as needed, as part of Appendix K. Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver. Please see a copy of the approved Appendix K document.

A few elements included are:

Approval of nurse overtime for nurses working in the home setting at a rate of time and a half (for medically fragile, technology-dependent (MFTD) waiver participants only)
Parents who are licensed nurses may be paid caregivers (for MFTD waiver participants and Nursing and Personal Care Services (NPCS) non-waiver participants)
Respite hours are increased to 672 per year with respite provided at an increased rate (for MFTD waiver participants only)

Our DSCC team is here to support our Home Care participants and families. We will continue to work closely with HFS to focus on your concerns and find solutions.

We are all facing new challenges as a result of the COVID-19 pandemic. Please continue to communicate with your DSCC Care Coordinator or feel free to contact our administrative team to discuss any additional concerns you may have.

DSCC’s updated Family Advisory Council makes it easier for families to take part and share feedback.

Feedback from our parents and participants is important to us at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

We have updated our Family Advisory Council (FAC) setup to make it easier for families to take part and share their input.

The FAC’s mission is to bring together families and our staff and leadership to promote the delivery of participant and family-centered services.

Our updated council will connect families to resources and provide guidance to strengthen our teamwork, improve communication and empower families to have a voice in their child’s care.

Our Family Advisory Council will consist of 15 family members and two DSCC staff members. Members must agree to a one-year commitment with an option to stay for a second.

The FAC will meet in person twice per year. Meeting locations will include Springfield, Chicago and southern Illinois.

We plan to hold a virtual meeting in September 2020. We will hold two more virtual meetings per calendar year via telephone or video.

FAC members will receive $100 per face-to-face meeting with travel reimbursement, lodging fees and per diem included. Members will receive $50 per virtual meeting.

Family engagement is essential for a successful Family Advisory Council. FAC members will have a shared responsibility to facilitate meetings and keep participant- and family-centered values at the forefront of discussions.

We ask that FAC members not only attend scheduled meetings but also share ideas, provide feedback and give support to other members. These are crucial components for a strong and productive committee.

Eligible FAC members must:

Be a family member of a current or former Core or Home Care program participant
Have knowledge of and interest in improving systems of care for children with special healthcare needs
Have time for quarterly meetings
Can travel to the regional hub for face-to-face meetings

Please contact Adell Scott (adells@uic.edu) or Claire Richardson (clairer3@uic.edu) if you have any questions or recommendations. You may also reach them by phone at (217) 558-2350.

Strategies to Empower Family Caregivers

DSCC Participant Opens Community Pet Pantry

Social Connection Helps Physical and Mental Health

In the News: DSCC Participant Wins Adaptive Bike

DSCC Staffing Interruption Update for Families

Remote Learning Tips and Tools for Families

Home Care Families: Share Your PPE Concerns

What Happens When Caregivers Get Sick? Preparations During COVID-19 and Beyond